What’s New?

The July 2018 website update includes the following changes and additions.  Thank you for visiting!

• ECD Awareness Week is September 10 – 15, 2018, find ideas on what you could do to spread the word about ECD!

• A new ECD treatment and care location was added to the network, find all centers listed here: ECD Care Centers.
  • California – Emerging Care Center
    Institution: Stanford University
    Location: 269 Campus Drive, CCSR 1155
    Stanford, CA 94305-5156
    Contact: Beth A. Martin, MD
    Telephone: (866)742-4811 or (650)498-6000
    E-mail: Martinb@stanford.edu

• Find new resources and other community fundraisers on our Host Fundraisers page.  Let us know if you are planning an ECDGA fundraiser this year or would like to submit a giving story!

• Press Releases are available to share with your local media and friends to help raise awareness and support for ECD families.
  • July 2018 University of Miami Medical Education Grand Round
  • New California ECD Care Center at Stanford 
  • June 2018 Houston Methodist Medical Education Grand Round

• Announcements include a nomination for our President, Kathy Brewer, to receive a Global Genes advocacy award.

• The 2018 ECD Patient & Family Gathering page includes meeting topics that will be covered by knowledgeable physicians.

• The 2018 Medical Symposium registration is open. Invite your physician to attend, collaborate, and learn more about your care.  An announcement flyer is now available to print or email.

• The following language pages have been updated with new information on treatments, events, and more.
  • French
  • Chinese
  • Portuguese
  • Hindi – NEW language added!

• New chat session summaries have been added for 2018.

• New members have been added to Member Locations.

• The following full-text medical journal articles have been added to the 2018 list.
  • Periaortitis, hairy kidneys and bone lesions
  • Vemurafenib in Multiple Nonmelanoma Cancers with BRAF V600 Mutations
  • Erdheim-Chester Disease Presenting as an Anterior Mediastinal Tumor without Skeletal Involvement

• In case you missed it, the most recent e-newsletter is available: April/May Newsletter.
  See all ECDGA Newsletters and sign up for future emails.